Scalp and hair problems possibly from discoid lupus

@pollyann Welcome to Connect. We’re not doctors on this site but we all try to share information and support. What you have mentioned in your treatment of discoid lupus is what is suggested by the lupus foundation. Plus covering up from the sun is so important! I have a different type of autoimmune disease and also need to stay out of the sun because of my medications. Have you seen a rheumatologist? They seem to be the ones with the most knowledge of autoimmune diseases. Did you have a biopsy to confirm the diagnosis? Please stay in touch, someone on the site may have direct experience.
https://www.ncbi.nlm.nih.gov/books/NBK493145/ Check out this website

I live in Hawaii so of course there is plenty of strong sun but I always wear a hat. I have also had a couple of inconclusive biopsies. I wonder whether I should have another one while it is so bad. Also, I haven't seen a rheumatologist for a few years and never about this problem. I have seen him in the past for Sjogrens syndrome and fibromyalgia. Thanks for your ideas.

Hi. I'm sorry to hear you can not find relief. I myself suffer from an occasional psoriasis out break. Mostly along the back of my hair line. I have a ointment I use to keep it under control. My biggest scalp problem is pain. My hair hurts. Crazy as it sounds. My Dr tells me it is from inflammation. When it does occur, I can not stand to touch my head, or move my hair. It is the strangest thing.

Well, I'm sorry to hear about your scalp problems. What strange things we get wrong with us and the medical profession so often doesn't understand. My Dr obviously didn't understand my problem and so gave me shots in my scalp of something I must be allergic to. My hair fell out in the area she gave several injections and I now have a problem that is way worse than it was to begin with. It is depressing to lose hair and my bald patch is a good size. I try to cover it with the rest of my hair but it isn't easy. I don't really know what to do next. I think I may see a rheumatologist about my immune system.
If you have inflammation why can't they give inflammatory medication. Having said that, mine must be inflammation too. My manicurist lost hair recently and had itchiness and bald patches. They said it was stress and gave her pills but I don't know what they were. She seems ok now and her hair grew back.

Have you ever had patch testing done for contact allergies? I have Lupus. I also have environmental allergies. I had skin on my scalp/back of my neck get bad enough that I had a biopsy for psoriasis. I didn't have psoriasis, I ended up having contact allergies to fragrance. Steroids won't provide much relief for contact allergies and can be another contact allergy themselves. It can be very hard to avoid products with fragrance (and other top contact allergies.) Avoidance of triggers is usually the only way for skin to clear up. You have to avoid all products with - hair, skin, household - as well.

I think you should see another doctor for the maybe lupus.i have intense itching on my scalp sometimes. I use shampoo and conditioner with tea tree oil, over the counter. I also have some liquid to put on after washing. Brand name OGX. Green bottle Really helps. If I skip a couple days of cond. then its intense itching. My dr says no to lupus on the scalp. All my antibody tests were normal for years. I finally found a test online called anti'-smith also called anti-sm. I tested positive for lupus 3 times, only in upus
. But wasnt active. Although last few years negative drs have said numbers go up & down.if it was me I wouldn't take these strong drugs for a maybe diagnosis , who know what else it is doing inside

@pollyanne I’ve been thinking about you and wondering how you’re doing. The fragrances the manufacturers insist on putting in everything can drive us crazy! Have you tried changing to plain soaps, etc? You also said that you were going to try to see a rheumatologist—have you been able to find one? Please let us know!

I have been meaning to write something more and thank you for asking. Here is an update. I have managed to make an appointment with a rheumatologist on Oct 16, so there is a bit of a wait but that's OK. Meantime I am taking the Plaquenel because it takes 3 or 4 months to work. My original dermatologist has suggested that I try another medication also. [It's a long name and I will check it and let you know next time] She believes that I have Discoid Lupus plus a neurological problem where my nerves are not firing properly. I also have a slight itchiness all over me especially my arms.
I am also going to ask my Kaiser dermatologist for some allergy patch testing so that we can see what might be going on there plus I am seeing my new family Dr on Monday and will ask him for a thyroid test just to make sure there is nothing there. It all seems nothing but Drs right now. I do also use the Ketoconazole shampoo every couple of days as I feel that it soothes. It is anti fungal which also makes me wonder about yeast in my body. When I was younger I used to have a lot of yeast infections.
I also have Sjogrens Syndrome and irritable bowel and some suggestions of fibromyalgia. [Quite a mess really aren't I, although basically I feel healthy]
My original dermatologist spoke to me yesterday on the phone and we went over everything. She told me not to give up. Apparently there are also scalp specialists and it might be good for me to see one. However I have Kaiser insurance and I don't think they have one. It might be possible to have Kaiser agree to me seeing a scalp specialist at Mayo clinic, in which case I would go to Phoenix. We have family in Tucson. So there are a few things in the works. I am also using hydrocortisone lotion on my scalp instead of the clobetesol which was what the kaiser dermatologist injected me with. It obviously doesn't agree with me. I just hope it hasn't killed of the hair follicles.
I will stay in touch with what else happens. Thank you for showing an interest in me. It is a good feeling to have some support.
Jennifer

@pollyann I’m so glad you’re moving forward. Your list of doctors is getting so long—just like mine did! My husband started a spiral notebook with sections for each doctor just so we could keep track. Exhausting! The same notebook went to every appointment so we could refer back to other appointments and doctors. It has worked so well! And, include your new doctor in on everything!
I sure hope Kaiser can agree to a scalp specialist so you don’t have to make such a major trip! But, it’s probably worth it, just to get answers. Do you feel like your getting somewhere?

I don't really feel like that yet. I am looking forward to chatting with the reumatologist to get his/her input and maybe some updated blood tests. I am also looking forward to meeting my new GP as my original Dr retired and the one that took his place only stayed for about 18 months. The nurses are all enthusiastic about this new man so I am optimistic. I hope the appointment is long enough for all my problems. I shall keep a list before I go in there on Monday. Thanks for the ideas about the notebook.